Saturday, November 4, 2017

I visited an infectious disease specialist this week (Dr. P), in part because I had heard that her referral would be a necessary step in obtaining approval for IVIG, which I've been hoping to be prescribed. It didn't go as hoped.

As background: this was the same infectious disease specialist I consulted in 2011 when I was still in the "acute phase" and didn't yet have a diagnosis. I remember being really confused and scared at the time. In the end, she suggested I might have post-viral syndrome. I thought maybe, upon seeing me again after 6 years, she would be surprised that I still hadn't recovered and perhaps become extra motivated to help find solutions.

I brought copies of my labs and she reviewed them. She had two conclusions: (1) the four positive Epstein Bar Virus (EBV) IgM results are, according to her, "false positives," and (2) even if they are not false positives, there is no point in continuing to take Valacyclovir.

This first conclusion about "false positives" shouldn't have been surprising to me. When I saw the first positive EBV IgM test result back in January, 2017, I thought it must be a mistake because I had already had EBV in the past and it was my understanding that once you've had a particular infection, your immune system will never produce IgM antibodies to that pathogen again. And it certainly won't produce IgM antibodies for months or years on end. However, after one of my other doctors, Mr. M, started taking these test results seriously, I suppose I concluded that perhaps I didn't fully understand how IgM antibodies work. Maybe I had oversimplified it.

Now, after having consulted with the infectious disease specialist, I think she is probably correct. But it still doesn't answer the question, why am I producing these consistently false positives? Is there something about my blood that makes these false positives happen, and is that, itself, indicative of a disease state? The tests were conducted by two separate labs which use different screening methods, so why am I testing positive at both? Dr. P could only respond vaguely that "EBV serology is complicated."

In the end, Dr. P offered to order a PCR blood test to be absolutely certain that I don't have an active EBV infection. PCR screening is, more or less, the "gold standard" for viral detection. Rather than test for the presence of a virus indirectly, by looking for the immune system's response to the virus (antibodies), PCR screening looks directly for the virus itself. I agreed that I wanted to know for certain, even though Dr. P said she herself was already certain. I haven't given blood yet for this PCR screening, but I will soon.

There's no point yet in discussing Dr. P's second conclusion that taking Valacyclovir is pointless for EBV infections. I have my doubts about that conclusion (it feels like the "standard medicine" approach, which puts on blinders when it comes to complex disease states like ME). But I'll wait to see what the PCR screening reveals before I even consider that issue further. If Dr. P is right and I don't actually have active EBV, then I can stop taking Valacyclovir immediately and don't need to make any tough choices.

Dr. P also made it clear that I have absolutely no hope of getting approval for IVIG because of my total IgG count which, despite being low in one subclass, is quite "robust." From everything I've been reading lately about how difficult it is to be approved for IVIG, I think she is probably right. I'm going to move on from that quest.

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DISCLAIMER: I am not a doctor and have no medical training. Nothing in this blog should be construed as medical advice. This blog simply recounts my personal experiences and, at times, summarizes research from other sources. I can't verify the accuracy of these other sources. Never rely on anything you read here in making your own medical decisions. Always consult a doctor.

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What is Myalgic Encephalomyelitis (ME)?

The clinical definition of ME is complicated, and the symptoms are many. It is a "multi-system disorder" that affects a person's immune system, hormones, nervous system, and energy (at the cellular level). I prefer to explain, simply, that it feels like I have the flu. Every single day. This is an oversimplification, but it's often the best way to explain it to a healthy person.

About Me

I came down with ME in June, 2011. I was diagnosed six months later. This blog tracks my progress; my successes and failures along the path to (hopefully) sustained remission.
I live with my wife and two young daughters in Southern California.